Georgia's Journey

A blog about family life and remembering our sweet Georgia, who died of SMA.

Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Monday, October 6, 2014

Today I am remembering my angel that never lived to see her first birthday. Georgie would have been six years old - a champagne birthday! While we continue to celebrate her very special life, there will be no champagne. In many ways, today is the saddest day of the year for me. It is the day that reminds me of everything that might have been...

In a recent family picture Mike immediately noticed that there was a perfect space that should have been filled by another one of our girls. With every milestone that our family or one of our kids mark, we notice her absence. We did not send her off to school in September with her sisters. We did not take her to the zoo or swim with her in the backyard this summer. We will not be buying her Christmas presents or helping her write a letter to Santa. We will not be taking her on holiday with us in January. Yes, even six years later we both still have random moments where we feel like we're missing someone.

While it would be easy to let darkness and despair overcome me that is not what Georgia was about and certainly not what she would ever have wanted. She lived a very short life but it continues to impact so many others'. My daughter was full of light and brought joy into our family. While I will never hold her hand to cross the street, I can remember the way her little hand felt in mine. While I will never see her smile of hear her laugh again, I have many pictures and videos to remind me. While I will never brush her hair, I am lucky enough to have 3 daughters that let me do just that!

On days like today Georgia's absence is overwhelming. It's very hard to celebrate a child's birthday without the child being present. I could easily let myself be overcome with the feeling of having lost her but today I am reminding myself of her ever presence. I carry Georgia in my heart every minute, of every hour of every day. It is she who reminds me to be grateful. It is she who reminds me to laugh it off. It is she who reminds me to be kind and to give generously. She was a gift!

Today we will not be having a party or even lighting birthday candles. I am sure there will be tears but there will also be smiles and laughter. We will be grateful to have one another and grateful to have known her. Truly, it was an honor.

Monday, August 25, 2014

Five years ago, Georgia died less than three weeks after her diagnosis. As a family, we had only just begun to understand anything about Spinal Muscular Atrophy and she was already gone! It was devastating and heart wrenching. While I knew, that I it was too late to save my daughter I could not sit idly by as other families continued to lose their babies.

For the last five years, our family and community has continued to try to raise awareness and funds towards a cure. This has not always been easy. To say that is emotionally exhausting at times is an understatement. The truth of the matter however, is that we really are getting close!

The SMA community has been getting louder and more powerful by the year, thanks mostly, to some very influential and inspiring people in the states. This past May the first infants with SMA type 1 (just like Georgia) are receiving the first ever trials of gene therapy. There is also something new and fun happening, that while isn't directly related to SMA, can only help!

The ALS ice bucket challenge has already raised over $70 million and it's everywhere! People all over the world are learning about this brutal and devastating disease! What many people do not know is that SMA is considered Baby ALS in that it is a strikingly similar disease that it affects much younger individuals. The momentum created by this challenge is opening up a conversation and creating a new understanding.

Make know mistake, momentum is a powerful force! It is a strength that allows something to grow stronger and or faster as it continues! The families that are waiting for cures to ALS and SMA, need this momentum.
It allows parents even like me to feel a new sense of optimism and support. As we approach this year's Georgia's Journey of Hope and what would have been her 6th birthday, I can honestly say that I am feeling... HOPEFUL.

Please continue to support these worthwhile causes. You can do so by choosing to participate in events, volunteering or donating. The momentum is growing faster and we are all moving towards something miraculous that will change lives forever. Won't it feel good to say that you were part of it?

Monday, April 21, 2014

Five years ago, on this day, when the veil between this world and the next was opened, I knew that you had chosen your time. In those brief moments, even as I held you in my arms I saw you before me: a smile on your face, a skip in your step as you lifted your hand ever so slightly to wave. There was joy on your face even as my heart was breaking, and I knew that you were finally free from the bonds that held you so still here on earth. Knowing that you were free and had known only love allowed me to say good bye.

While over the years I have made peace with much of it, the world since losing you has become that much more confusing and sometimes painful. 'Let go of the things you cannot change.' 'Forgive yourself.' 'Be grateful.' These are the catch phrases of the day and truly words to live by but I still have days where I want to rage at the world! You taught us all so much about love but not how to let go. How do I let go of a part of myself, of my heart? Could I have fought harder for you? What do I do with all the 'missing'?

I miss your smile and your giggle. I miss holding your hand and giving you a bath. I miss watching your sisters play with you. I miss watching your daddy hold you. I miss holding you. You would be 5 today. Would you have gone to kindergarten or would we have home schooled you? Would you have loved music as much as you did? Would it have been Mozart or Katy Perry? Would your hair be long like Rapunzel's? What would your favorite color be? Your favorite tv show? Who would your friends be? Would you be shy or outgoing? I miss knowing all of this.

I hope that I am right. I hope that you left feeling loved and that I had not given up on you. I would be happy to be fighting alongside of you right now. I let you go because I knew I had to but that doesn't mean that I wanted to. I let you go to fly free but know that I will spend every day of the rest of my life missing you.

Wednesday, October 2, 2013

Georgia's birthday is just a few days away and as it approaches I find myself seeking quiet and solitude more and more. Since her death, I have been continually humbled and grateful to all of the support we have received but I have also been continually surprised by people's lack of true empathy. Empathy is described as the ability to share and understand the feelings of another. And while I know that the people in my life always have the best of intentions I often feel quite misunderstood.

I have always been and continue to be a very social person. In April and in October I find myself pulling away from others and wanting to spend more quiet time with my family. This is nothing personal. This is called survival! I have three living children that have many expectations of me every day. I also have a husband that while super understanding and supportive also deserves some of my attention. I still manage to get my children to all of their activities, help them with their homework and work part time usually while smiling. To be quite honest I think I hold it together really well.

What drives me a bit bonkers this time of year is that some of the people closest to me seem to have certain expectations. If I don't immediately accept an offer to go out or sit down with a huge smile on my face ready to chat they look hurt. If I don't want to do exactly what they want to do or haven't called them back within a few minutes they are offended. Even after I have explained to people how I feel about this time of year they still want more from me.

So let me be clear. I don't have any more to give you. My lack of a smile or my silence has nothing to do with you. Please understand that it is not my job to make you feel happy or better about yourself. Nor, is it your job to try and fix me. There is nothing wrong with me! My child died and I have every right to take time to myself without feeling guilty that I am hurting somebody's feelings. It is also my right to grieve for her as I choose. Nobody else gets to set limitations on my feelings.

There is an old saying, "If you love something set it free. If it comes back to you it's yours. If it doesn't, it never was". After four and a half years those people that have remained dearest and closest to me are those that have allowed me to be free. They don't make my grief about them. They accept me for who I am now,...today. They let me go (twice a year) and they wait patiently for me to return.

If my post sounds angry or ungrateful, it's not meant to. It is a vent for frustration and also a hope for understanding. I consider myself a kind and generous person most of the time. I feel like I am supportive of others and a good friend. For a few days in October and a few days in April I get to be selfish and take care of me. It is the only way that I have anything left to give the rest of the time.

Thursday, September 5, 2013

September 2013 has been in the back of my mind for a long time. Today you would have started kindergarten! Or, with SMA perhaps you would have stayed home. The truth is I don't know but today was bitter sweet. How lucky I am to send two girls off to school - both smiling and a little nervous. I even have the comfort of having a little one at home to keep me company. And yet, the hole, the void today is monstrously huge.

Tomorrow, when I wake up I will have survived one more milestone you missed. Today was HARD!

Wednesday, May 22, 2013

The first time I saw your heart beat on the monitor I was reminded to have faith. With your first breath, you reminded me to just breathe. When you smiled and then laughed I was reminded that it was okay for me to do that too. The first time you stood up I was reminded to have strength and when you took your first steps I was finally reminded to believe.

At three you are spoiled and you are bossy!! I take full responsibility for these two traits but make no apologies. You are also amazingly sweet and charming. At three you love to dance and sing and run and climb. You are very good at puzzles and have an amazing memory. You can recite all the verses to 'Colors of the Wind' and 'Baby Beluga'. When I hear you singing these songs I am reminded to be joyful.

In the last year you have become much more independent and have discovered imaginative play. I love having tea parties with you and watching you eat your pretend sandwich with a fork! LOL You are learning to play with friends instead of just alongside of them. You have no trouble telling people NO and no qualms about giving poor unsuspecting people dirty looks!

Your daddy is your hero and Cocoa your best play mate. You love having your sisters around and miss them while they are at school. You love being helpful, especially when daddy is making pancakes! You are his taster!

You are my daily reminder to be grateful and my light on the dark days.

Happy 3rd birthday beautiful girl!! You are loved more than you will ever know!

Monday, March 18, 2013

Today marks the first day of kindergarten registration for Fall 2013. I can list off at least ten little ones I know that will be registering. It's an exciting and emotional time for them as well as their parents. Four years ago I had a friend register Calla for kindergarten as I was in the PICU with Georgia. I didn't even have time to choose which school, never mind sit back and consider what a huge step my daughter was about to take. My little girl barely spoke the first half of kindergarten, only starting to share after Christmas that year. : (

I registered Maya two years ago and was excited for her as I knew that it was going to be a great experience for her. Her teacher was amazing and understanding and I knew that she would help to build up Maya's confidence. She did! Maya made some fantastic friends and is a little social butterfly.

Had Georgia lived, I would have been registering her this week. I am having a hard time listening to people feeling sad about having to register their 'babies'. I feel awful but I don't have a lot of sympathy. I know that it can be hard for some of them but I don't even have a child to register.

Thursday, March 14, 2013

At 9 years old you are wise beyond your years. You are calm and practical, and seem to know yourself better than a lot of 29 year olds. You are sweet and you are kind. You are an amazing big sister! I love to watch the way you stand with your arms outstretched in front of Maya when you go to cross the street. I love the way you get right down on your knees to talk or play with Aria.

At 9 years old you are bright and happy. You love to sing and dance and play. You love animals especially your dog Cocoa. Cocoa is always the first person/being you greet when you come in. You never complain when asked to do something for Cocoa and you love to take her outside to play. Your love for animals just seems to be a part of who you are and you still want to be a vet when you grow up.

At 9 years old your favorite color is purple. You prefer to wear jeans to dresses and don't really care how you have your hair. Your strawberry blonde hair falls down your back in a mane of beautiful waves. People are always commenting on it.

This past year you have started going on sleep overs and you love to spend time with your friends. You have started talking more at school and singing all the time. You have clear opinions of your own and accept those of others without hesitation or judgement.

You are growing up before my eyes and much faster than I could have ever imagined! Sometimes I'd love to hit a switch and stop time for just a few moments - to truly have a good look at you. You are changing so fast and I want to know you always. You are still a little girl and yet I see that you already know so much about the world. A tween you are now called!

At 9 years old you are a light in my life - as you have been from the moment I knew I was carrying you. As you continue to grow and change I need you to know that my love for you never does. I am so very grateful that you call me 'Mom'.

Friday, March 8, 2013

Aria is now the same age that Maya was when Georgia was sick. I look at Aria and can't imagine leaving her and yet that is exactly what I did to Maya and Calla. The memory is clear in my mind. I had loaded Georgia into her carseat and was about to place her in the car to take to the hospital. My mom had literally just walked up. There on the driveway, I hugged Calla and Maya and told them I'd be back later that day. I left on March 16th and except for a few trips home to shower I didn't return for almost three weeks.

Looking at Aria today I wonder how I could have walked out on my then two and just turned five year old. I wonder what it has done to them emotionally and how it will affect them in the future. It's funny how I know that one decision I made will impact them for the rest of their our lives. The sad part is that I know, if placed in the same position again I would do the exact same thing.

Taking care of a very sick child changed me. It made me prioritize things and people in my life - even my children. As parents we all know that when one of our children isn't well, they get more of our attention. When children are hospitalized and possibly dying the case becomes even more extreme. I realized in those first few days that my time with Georgia might not be very long and so I poured all of my love and attention onto her. I was desperate for her to understand that no matter how short a life she had with me I LOVED her and would always do so.

In the end, that meant almost ignoring my other two beautiful girls that I loved equally. I left them for others to care for. I regret not being able to care for them during that time and yet I know that I would never have forgiven myself if Georgia had died anywhere except in my arms. Now I just have to hope and pray that Calla and Maya will grow up knowing that I have given them all that I could - that I continue to pour all of my love and attention on them every day. I need them to understand that I have always loved them just as much and have given them all that I am.